Beyond exhausted

[Northwesternercas]

I am the main carer i.e. the buck stops here, for my 90 yr old mum. I should say now that I love her dearly because what I am about to write might make you think otherwise. Since my dad died 11 years ago I have moved from support for my mum to main carer.

In Jan 2018 she had a stroke and at the same time her bowel twisted. She has been diagnosed with dementia, has macular degeneration, is fed by PEG as she cannot swallow anything, chokes on her own secretions (we have a vacuum machine), has a stoma bag, has a heart condition, is v unsteady on her feet. The dementia means she forgets to use her frame, tries to walk off when the peg feed pump is in place (causing pain and inflamation), has actually cut the Peg tube, fiddles with her stoma bag causing it to leak. She also gets spontaneous bleeds on her legs which the nurses have to dress.

However, despite the dementia, anyone doing a home visit will not immediately realise there is anything wrong with her brain as she presents very well. The bowel resection now has adhesions which cause Mum’s bowel to block and she has been in hosp 5 times since her original discharge in April ‘18. I have to record her bowel movements and try to catch a blockage at a very early stage and then increase the medication to try and clear it. The DNS do not support me in this.

District nurses visit twice a day, and we have three carers a day, including me. I am there every day from 9am to 2pm and carers come late afternoon and evening. They call me to sort out the smallest problem. I have POA for finance, not health.

Mum’s dementia means that she is no longer safe at home so we are starting to think about a care home. I would think that she would qualify for Continuing Health Care, especially considering the PEG and the choking issues. But I do not think I can cope with a battle unless I have a realistic chance of success.

What do you think. Should I try? (We don’t get attendance allowance because Mum keeps going back into hosp and hasn’t been home for 13 straight weeks yet).

[sassy59]

Hello there. I am sure you do love your mum dearly but frankly you are being expected to do far too much. Your mum needs continuous medical care 24/7 and what you are being expected to do is intolerable.

Please make sure you have Lasting Powers of Attorney for health and finance as that’s helpful.

Get your mum into a care/nursing home which should meet her needs as soon as possible please. Ask your GP for help and social services.

I wish you well. Xxxxx

[FredaE]

Awful nightmare for you both.

There are supposed to be strict criterial for NHS continuing care. There is a funding battle between the NHS who don't want to pay for it and the Local authority who don't want to pay for it either and it is very easy to fall down the crack between them. Also Local Authority care is MEANS TESTED so if you have more than a given amount of money you get nothing.

The conditions can be found on line which helps you to understand. It is long and a bit complicated but if you take it slowly it is easier.

The first thing to bear in mind is that NHS is for medical care and Local authority is for social matters.

Dementia, continence and night time supervision are usually regarded as social. Anything which requires a nurse rather than a carer like the peg adds towards your continuing care score.Make sure your district nurse is doing as much as she can. Try not to be doing anything which a nurse ought to be doing. I was told that I could not have CC but if I had not looked after him so well and he had bedsores which had to be dressed by a nurse then I would probably have got it. Its a tough world out there

When you apply try to get the application made by someone who knows what they are doing.. A support group advisor orsomeone like that

Remember to use the right language. The assessors look at any attempt to make the best of things and say "Oh thats ok then. If she has good days they can do everything on the good days" We know it is not like that. So do they. Trouble is that they are under pressure to save money.If the question is "Can she walk across the room, and there are times when she can - then the answer has to be No she can' because sometimes she can't and that is what they want to know. Worst case scenario always. It may seem like exagerating but that is how it is. There is no credit for courage.

FredaE

[Northwesternercas in reply to FredaE]

Thank you! I guess my issue is that I don’t know what would be medical care. Stoma change - not, care ofthe PEG site, possibly as it does get v sore, choking - surely yes, Peg - yes. Just seems sounderhand that there are no clear guidelines, which just adds to the stress. I am 69 and don’t deal with stress well - causes IBS flare up, ectopic heart beats and high BP so v reluctant to apply if there is no chance.

[FredaE in reply to Northwesternercas]

Probably asking too much but have you contacted your local Hospice? They not only care for terminal and life limiting illnesses but our local one has dementia support and cares for carers. They may well run a course on how to care and how to manage stress.I don't know how I would have managed without them You also have access to their social worker. Just ring them up and explain your problems, including your own health, and see if they can offer help or advice.They are lovely people and there is no charge

[Northwesternercas in reply to FredaE]

I hadn’t even thought about our local hospice so thank you for that.

[Hellebelle in reply to Northwesternercas]

Agree with Freda, we have received some excellent support from dad's local hospice.

[Hellebelle in reply to FredaE]

Well said Freda, I am afraid you have to fight for everything now.

[Hidden]

Hi Northwesterncas,

I don't doubt for a second that you dearly love your mum, but that's not really the issue here. It's that the burden of care is so heavy for you, and you matter too, as does your mental and physical health.

You are dealing with some very complex health issues here. Imagine if a person with these challenges was admitted to hospital. Would the most junior untrained student nurse be left to make decisions about treatment and care? Not a chance. It would be considered unsafe and unethical, and it's only miraculous that you are able enough to not only understand all that is happening, but to cope with its aftermath too. And to take on the responsibility too.

I think FredaE has given you the most comprehensive reply about how things might play out if you decide to apply for continuing care and I'd endorse getting some help with applying, if you decide on that route. I believe there is a fast track route too, if the end of life is approaching. Whether that continuing care is at home or in a nursing home, what matters is getting the financial help for you to choose the scenario that will enable both you and your mum to be more comfortable.

My feeling is that it is worth the struggle to apply for it. Your mum so clearly needs 24/7 care which you are now too exhausted to provide . It's not a failure, or a lack of love to admit to that and if that means making alternate arrangements in a nursing home for your mum, that's not abandonment. If you take time to carefully choose the best nursing home you can, and continue to love her as you do, it's still love.

I can't decide for you, but very best wishes to both you and your mum, and may whatever you decide to do be a good outcome for you both.

[Northwesternercas in reply to Hidden]

Thank you. Despite all her challenges, Mum seems quite well physically, so long as we can prevent a bowel blockage and avoid falls, end of life care is not an issue, thank goodness. I just have no idea whether she would qualify for CHC. We do not have a lot of money, probably enough for about a year in a care/nursing/dementia home. My fear is that we find a decent place, then run out of money and she then ends her day in some awful council run facility where she might be mistreated.

[MAS_Nurse]

Hello to you, I am so sorry for your situation and very pleased that some of our lovely members have replied to you already.

I know the system of care is a lottery out there but there are plenty of organisations that can help. Lets start with Age UK they can help with the forms as well as the Citizens Advice. They also have a phone/email befriending service. Also I think it is worth while speaking with Mum's GP and asking for a multi disciplinary team meeting (press for that one if you feel able to). This is a very important one as it can help enormously as they do have a duty of care not just to Mum but you too. If you have a different GP get them in your corner to help fight for you too. Mind maybe able to help too, as they have care services in certain areas of the UK.

Please keep in touch with us so that we can support you too. Good luck and best wishes.

MAS Nurses & Moderator.

mind.org.uk/information-sup... Tel helpline: 0300 123 3393 or text to

86463.Mon-Friday9am - 6pm.

Stroke Association helpline: 0303 3033 100. Mon-Friday 9am -5pm.

Age UK - ageuk.org.uk/services/ Help Tel: [phone].

Citizen's Advice - citizensadvice.org.uk/aboutus/ Tel: [phone].

[Northwesternercas]

Thank you. Mum’s GP is kind but not especially interested and knows nothing about care options, just refers me to Social services. Wouldn’t even get involved when I tried for attendance allowance to help with current care bills.

[Hidden]

Hi - been there, done that! I have a very elderly mother and a terminally ill husband. I would suggest that you phone social services and ask for a home assessment. You are entitled to it and they can point you in the right direction and answer questions. Don;t forget that the CAB are always available to help you with forms. etc. You are entitled to all these things as is your mother. Don't be put off. Age Uk can also be helpful. Good luck

[Northwesternercas]

Thank you. We have an assessment due at the end of the month but the last one was a major non-event. For the hour they are with us Mum can seem quite lucid, though an hour later she has forgotten they were there. They speak to her, not me, and in Mum’s head everything is fine and that is the impression they get. I am left feeling that they think I am just making a fuss. I will see how this one goes.

[FredaE]

This is so common. That patients of all sorts can make a superhumn effort for a short time boyh mentally and physically. Don't know ow to deal with it.

[Hellebelle]

It is important that you make the assessors aware of all the issues as they will be only too happy to have your mum's word for it. Write it all down so you don't forget and give them a copy, otherwise you are relying on what they choose to record.

[FredaE in reply to Hellebelle]

Absolutly right. These people who come are mostly trying to help but they are under immense pressure from their employers to keep down costs and after a time they get nearly as worn down by their circumstances as you are by yours. When it is time to SLIM DOWN THE OVERSIZED BUREAUCRACY or some such virtuous expression, its not the unkind or inefficient who go but the ones who spend too much on helping the clients and not showing proper respect for the bottom line.

By the way I do apologise for my typing. I keep chasing the predictive text out of my computer but it creeps in again in updates and strikes as I click the send button. Sometimes its just rotten typing ......

[Hellebelle in reply to FredaE]

Absolutely, working for the public services is so hard and it can eventually effect your mental health as you are under constant pressure to cut costs. This takes its toll on the public personnel who have principles and want to do the right thing.

[Northwesternercas in reply to Hellebelle]

Just wanted to thank you! We have now had the care assessment. To start with the social worker just started to suggest more carer visits, then I emailed her the written description of Mum’s issues, as you suggested. We are now been advised to seek a nursing home, are applying for CHC, have been told that whatever happens the nursing element will be paid for. So thank you for your advice.

[Hidden in reply to Northwesternercas]

How really nice to hear that Hellbelle's advice has worked so well for you, and thanks for the update on progress. It shows that this forum can be so useful and it's also great to get your positive feedback! Very best wishes.

[Hellebelle in reply to Northwesternercas]

Hi, I am so sorry I didn't reply before. I am so pleased that it is working out well for you. Wishing you all the very best and a less stressful time!

[Bella395]

Having gone through a CHC assessment I would not say that it is particularly stressful. It is time consuming though.

There is a fairly simple check list first. Next is the Decision Support Tool and that takes quite a bit of time as they go through all the domains. Think it took about two hours. There are two people - a nurse and a social worker. You need to think carefully about all that you do and don’t play things down - tell it like it is. I found that I was quite upset and depressed when they had gone because I hadn’t fully realised just how much I have to do.

I applied because I wanted him to have the right care if I die before him or cannot continue caring. He was awarded joint funding. From what you describe, it sounds as if she ought to qualify for CHC funding.